Ten Years of Rheum

June 6, 2016

Ten years. 3562 days. On this day back in 2005, life was disrupted with four words: “You have rheumatoid arthritis.”

I remember how daunting that felt and the real fear that came with learning that this was an incurable disease, so as the anniversary of the diagnosis approached, I wanted to be able to honour the journey I’ve been on ever since and just shine a little light out into the world. It’s been a tough decade, no doubt, but it’s also been a fairly rewarding one.

My brother and I are creative types, so we were shooting the breeze about how to mark the occasion and he said something like: “You should acknowledge it in the same way you live with it – with a positive attitude.”

I decided very early on with my path with RA that no matter what it flung at me, I’d live the best life I could. RA pushed me, I pushed back. Of course, there were detours through fear, anxiety, depression and struggles to get the disease under control, all pretty normal considering my circumstances at the time, but it was meditation and mindful practice that always got me through the rough spots.

Both practices have led me to studying Zen Buddhism, which philosophically – not religiously – aligns with a lot of the ways I live my life.

I’m the first to admit, I’m still very much a babe in the woods when it comes to understanding what Buddhism is, but there are some rituals that are so beautiful because of their simplicity. That’s what I was looking for when it came to honouring my own journey with RA to this point.

You know how sometimes the spark of an idea kind of aligns with a method for achieving the very thing you want to do? When you get that quiet ‘yes’ that just makes it really clear it’s the right way to express how you’re feeling about something?

A few weeks back, an article about #bethelight popped up in my Feedly account about a Buddhist peace ceremony held last year at the Lincoln Centre in New York.

Thousands of people came together to place lanterns in the reflection pool to signify peace, compassion and life. Hundreds of square lanterns were set adrift and it was a beautiful, beautiful way to deliver a calm, quiet but determined message of peace. I started to look at how we could do something similar, on a smaller scale, near my home here in Sydney.

We are fortunate enough to live near the Parramatta River and there is a spot on my daily walk that I knew would be perfect for launching into the river.

Because we were going to use the water as the conduit for this, one of the key things we wanted to address was that any lanterns should do no harm to the environment.

Most of the lanterns I found were coated in plastic or had polystyrene bases, neither of which I wanted to put into the river. Eventually, we found paper lotus flowers with cardboard bases and no plastics or foam. That I felt more comfortable with because they would biodegrade. The candles we chose were made from beeswax.

At first, I wasn’t sure what I wanted to do with the lotus flowers, but one afternoon, I opened an old leather-bound notebook and discovered an entry was on the day I was diagnosed. The quote at the top of this post was the first one in it, followed by many others that have in some way helped me get through darker days by being uplifting, positive, meaningful or so funny you’d laugh and cry at the same time.

I thought, “What better way to send light go out into the world than to let the words of so many wise people go out into it?”

So I wrote the quotes onto the lotus petals and asked my family and friends to do the same: write any sayings or words they thought would help lift others up when they were struggling.

We set up near the boat ramp on Hen and Chicken Bay, where it seemed half of the neighbourhood had come out to watch a beautiful winter sunset. Honestly, it was as if an artist’s hand had drawn it to see how the sky changed colour and form.

If you can’t fly, then run.

If you can’t run, then walk.

If you can’t walk, then crawl.

But whatever you do, you have to keep moving forward.

~ Martin Luther King

Thank you for wise words, Martin Luther King

We waited until most people had left and the sun was just above the horizon. We set the first lantern on the water to see which way it would float, where the current was going and slowly but steadily, it picked up and went drifting slowly across the bay. One after another, we set ten lanterns into the water, one for each year, followed by several from my brother, mother and friends.

It was a small gathering but it was so special and meaningful to have these people join me in this little ceremony of light, hope and love. It was a quiet and unfussy affair, but in that simplicity is where we found the greatest joy.

More than a handful of people stopped to see what we were doing, to take photos and just witness something that, though simple, was really quite beautiful.

It seems a small thing, but sending the light out onto the water with love and hope was a truly joyful and compassionate experience. Life with RA is hard, but I felt so much peace at being able to do this for myself and for others who live with chronic disease.

If there’s one thing the #rheumie community on social media has taught me, it’s that there are a lot of us on this road with RA who really understand how hard it can be. So many in our community approach their situation with laughter, generosity towards others and with immense grace despite the difficulties we deal with on a daily basis. I wanted to acknowledge the support I’ve had personally and light a path for new rheumies just starting on their journeys with this disease.

Maybe there’ll come a day when we can gather together many people with chronic illness, whatever it may be, and we can let a hundred of these lanterns go. Wouldn’t that be something?